Family Stories

The house created a space where our daughter was able to switch her mode to
“I’ll beat it” before entering to hospital

The Hayashi Family StoryInterview: March 2018

Our daughter was three months old when we noticed something was not right with her. She had pus on her hips and the doctor we saw diagnosed her with anal fistula. Medication didn’t help her, and it was only getting worse. With persistent high fever, she looked weak. At that time we were living in Kagoshima and we sought medical advice from pediatricians and proctologists at university hospitals, but she wasn’t cured. We called hospitals all over the country and saw doctors when we heard of their experience with similar cases. Three month after the appearance of the first symptom, we could see a doctor, an authority of Crohn's disease, at the National Center for Child Health and Development. I had checked information and thought she might have Crohn’s disease. Still when she was officially diagnosed so, I thought “why our daughter.....”

My daughter’s doctor introduced Ronald McDonald House to us. She had to stay in the center for medication every seven weeks. Before she is admitted to the center for surgery, we stay overnight at the house. For my daughter, the house is where she switches her mind to “I’ll beat this” before spending nights at the center. When her symptoms get worse and she has to sleep at the center without passing through the house, she cries or becomes very unstable because she is not prepared for it.

She loves a stuffed dog toy which is on the ground floor of the house. So she calls the house “doggie’s house” and rushes to hug the dog as soon as she arrives there. She also appreciates the illustrations from Dick Bruna at the entrance of the room as well as the seasonal decorations in the lobby. Parents of children with rare diseases have hardly any energy for seasonal events as they are preoccupied with treatments for the child. All the warm and thoughtful efforts of the volunteers and staff fill us with joy.

Us, parents, can’t be happier than when sleeping on a bed in a private room. We have been to many hospitals, but there was no other such hospital with these facilities like the house. We never sleep or rest enough because we usually sleep on a simple bed or couch too narrow to turn around. Even when we stay with her until she falls asleep and come back late, we can have enough time to sleep as the house is close to the center. We are exhausted from looking after our child, but after sleeping on the bed, we become positive feeling, “let’s try our best again” the following morning.

We can talk to other mothers and share our worries in the house. After we take out what we have on our mind, we feel easier. When we find articles on new cure for the disease on a newspaper or magazine, we share it with each other. It is said that modern medicine cannot cure Crohn's disease yet. The symptoms change considerably and we get down without much hope when our daughter is in a bad state. But there was a time that we found a light in the information other mothers gave us and became strong again.

We sometimes use the house’s “Meal Program (dinner made by volunteers).” We feel relieved with a warm delicious meal when we come back exhausted. Our daughter is in the hands of doctors and nurses, so we can fully relax when we are in the house.

The house gives our family a huge support. There are many families who need support around the country. I hope there will be more houses in the future.